So... I’m furious ... she has accepted that I “clearly have an autoimmune condition” and that my “TSH at 13.31 is too high and my FREE FT4 is too low at 5” ... TPO at 1159.8 ... but is REFUSING me any medication and says I have to wait to speak with the endocrinologist which isn’t for another 3 and a half weeks !! I’ve emailed the surgery with a complaint and a request for a call back Monday morning 😡😡
So .... I posted on here after my last set of test results which showed high TSH and high TPO antibodies ... after speaking with my doctor, who referred me to a rheumatologist, endocrinologist and for an ultrasound scan of my thyroid, she then said she couldn’t prescribe me anything as my test was done slightly earlier than it should have been.
Result was I have had to wait another 8 weeks barely able to walk with intense joint and muscle pain, fatigue, stomach issues, dry and very itchy skin and so on ....
8 weeks to the day I’ve had my bloods done again yesterday and they reported yesterday evening as .....
TSH 13.1 range should be within 0.3 - 5.6
Free FT4. 5.2. Range 6.3-14
TPO antibodies. 1159.8 range 0-35
I’ve managed to get a doctors phone appointment this afternoon ... I feel that I should expect a prescription for Levothyroxine today. Obviously I’m very new to this and I was hoping for any advice so I’m not just brushed aside. I have a telephone appointment with the endocrinologist booked for 30/11/20 so I just don’t want to be told to wait as I feel so rough.
Thanks for your help
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Joanne1633
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A classic case of backside covering. Your doctor isn't apparently educated enough to realise that she has the power AND the duty, given your results to put you on 50ug T4 straightaway. This isn't a difficult decision to make, by all that is known and directed by NHS knowledge (poor as it is, but quite clear in your case). You must insist on an immediate offering of T4 therapy and quote NHS guidelines as your case for action.
Just a joke isn’t it ... I said that as far I was aware a GP clearly is able to prescribe and she said “Im not just prescribing it because you want it “ ... I mean really ... none of us want it we NEED it !! 🙈🙄🤷🏻♀️
Good lord , this is ridiculous . you have an absolutely clear cut case of Primary hypothyroidism. Which does not need to see an Endocrinologist before Levothyroxine is started. It doesn't need to see an Endocrinologist full stop. What are they quibbling about , is it because they don't have long enough between your NHs thyroid function tests to rule out a temporary issue. How long was it between the two sets of out of range results that they have ?
Ask then to follow the NHS NICE guidelines for treatment;
Managing primary hypothyroidism
1.3.3 Offer levothyroxine as first-line treatment for adults, children and young people
Ridiculous it is .... the first and second set only had 5 weeks in between and I questioned this when she sent me for the second set and she said it was fine. Who am I to argue 🤷🏻♀️ but after the second set she said she’d made a mistake and so I waited another 8 weeks to the day to have another set of bloods .... (which were yesterday’s ) so all in all they have the first set, 5 weeks later second set then third set 8 weeks later 🤷🏻♀️ clear enough in my eyes .... I just don’t get it and I feel so I’ll I just broke down in tears to have to wait another 3 and a half weeks to have a telephone appointment with endocrinology ... I have requested a call back from the practice manager on Monday but I’m so furious and upset
5 weeks + 8 weeks = 3 months apart in my opinion. So you have passed both these 'tests' from the guidelines below.
(So you have my full permission to be as furious as you can gather the energy to be........ i assume you feel totally awful, i wouldn't know cos i never had results that bad ...ever. I only know what TSH 8 and in range T4 felt like and that was crap enough.)
Tests when thyroid dysfunction is suspected
11.2.10 Consider repeating the tests for thyroid dysfunction in recommendations 1.2.8
or 1.2.9 if symptoms worsen or new symptoms develop (but no sooner than
6 weeks from the most recent test).
Treating subclinical hypothyroidism
1.5.3 Consider levothyroxine for adults with subclinical hypothyroidism who have a
TSH of 10 mlU/litre or higher on 2 separate occasions 3 months apart. Follow
the recommendations in section 1.4 on follow-up and monitoring of
Make an appointment with a different GP on Monday morning.
Obviously it’s more difficult on phone one to one
GP today obviously clueless
Is it possible to email the endocrinologist you saw. Send your blood test results and explain GP is refusing to take responsibility of prescribing levothyroxine and that you are extremely unwell
Email Dionne at Thyroid U.K. on Monday for list of recommended thyroid specialist endocrinologists
Yes I’ve asked for a call back from the practice on Monday morning with a different doctor ... I can’t email the endocrinologist as I’ve not seen anyone yet... got to wait till the end of the month ... I will email Dionne though .. thank you I appreciate your help 😊
Yes I will do this ... I emailed the practice manager earlier today but I’m also going to send an extra email with these guidelines and ask if there is any reason why they are not following them
The diagnosis of hypothyroidism requires abnormal TFT results.
A TSH greater than 10 mU/L combined with a FT4 below the reference range indicates the presence of overt primary hypothyroidism in ambulant subjects.
The diagnosis of primary hypothyroidism requires the measurement of both TSH and FT4.
Subjects with a TSH of >10 mU/L and FT4 below the reference range have overt primary hypothyroidism and should be treated with thyroid hormone replacement.
Guiding Treatment with Thyroxine: In the majority of patients 50-100 μg thyroxine can be used as the starting dose.
Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being.
The target is a serum TSH within the reference range.
Serum FT4 test results can vary immediately following the daily dose of thyroxine, but this is not clinically significant.
The ratio of FT4 to FT3 is usually increased in patient taking thyroxine. FT4 concentrations may exceed euthyroid reference range when the TSH is normal whereas FT3 remains within or closer to the reference range.
The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested
OMG Joanne your doctors ignorance is mind blowing even by NHS standards!! You must feel soooo poorly and to have to fight for treatment when you shouldnt have to is beyond the pale. Glad your speaking to a different doctor on Monday. If you can summon the energy put it in writing and in the letter state you want your letter put on your medical record.......generally surgerys dont like letters and respond more quickly as they dont want to be seem negligent.........which they clearly are in your case!
Secondly I would line up a thyroid friendly Endocrinologist. Have a look at Thyroid uks list.
Unbelievable! This is negligence! When you speak to someone on Monday mention PALS. This is a complaint service within the NHS. Have a look on google. You should definitely be on Levothyroxine at the very least. TSH of 13 is far too high and T4 far too low. Probably your T3 is very low too if they’d check it. Low thyroxine in your body causes a multitude of symptoms and yours are classic.
Speak to a different Dr if you can. If you can’t mention PALS to the practice manager, this should make them jump.
I feel for you. You shouldn’t be going through this. But a lot of us do unfortunately. My TSH was 36 when they finally gave me levothyroxine. I totally understand your frustration.
I’m sorry you’re having to go through this. I was diagnosed in January, TSH 6.2. Immediately put on 25mcg Levo. I’m now at 1.1 and 75mcg, so it’s working. My antibodies are still over 1300, I’ve been told by two doctors they don’t treat the antibodies, just TSH! It’s the antibodies giving me my symptoms but they don’t seem to care! I’m so fed up with doctors who know nothing about the thyroid!
They dont have any treatment to stop the antibodies am afraid. If only there was it would stop an awful lot of people needing replacement thyroid hormone treatment. Sadly no one has invented such a treatment.
You need to get full thyroid and vitamin testing done, privately if necessary
All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Do you always get same brand of levothyroxine
What vitamin supplements are you currently taking
As you have Hashimoto’s are you on strictly gluten free diet
Give it time. My antibodies were over 1300 for a long time. They have come down to around 300 now.
First things first. Get on some thyroid meds. Then follow the guidelines from Slow Dragon et al. Hopefully you’ll see an endo who will do a good range of tests for you. (Advice for Joanne1633 )
Don’t panic, it really does take time and even then you can go backwards occasionally. If you get your vitamins and minerals optimal, thyroid levels to the level that suits you best, possibly avoid dairy, soy and (for some people) gluten. And a few other recommendations, your antibodies could well reduce.
It took a long time for you to get this poorly, it’s not a magic fix.
When you get a really good day you’ll be amazed at how it feels 🌻
I hope they respond to your complaint - my husband complained about the way I was treated about my foot, asking for the complaints procedure and they never bothered to reply/send one. I wish we had chased it up but too many other issues in my life at the moment, so that rotten doctor got away with it. Best of luck and let us know how you get on.
Oh I’ll let you know... gotta be honest I just had to do it last night as I was so upset and I’m trying so hard to hold it together as I have 5 children, only 3 left at home, but I care for my eldest who has osteogenesis imperfecta (brittle bone disease) and is non weight bearing and also just post surgery and I’ve just come out of hospital with my daughter who has a partial thickness tear to her adductor muscle and is on crutches for at least 6 weeks ...🙈 I feel your pain ..., I think I was so emotional yesterday as I feel so rubbish and I really thought that they’d prescribe me some meds yesterday.
They should do - if the blood tests prove you are underactive there is nothing they can argue with and the fact they do means they are being grossly negligent. Not like Levo is a hard drug to get - it's fairly cheap. Best of luck xx
Just to add, even if GP is unsure about prescribing Levo , i see no reason why GP could not contact Endo with your results and ask if it's ok to start Levo. this week. There's nothing unusual about doing this sort of thing when they want to make sure of something.
Unless GP is afraid of asking for help and looking like they don't know what they are doing.
I just keep doubting myself and questioning ... am I being unreasonable? Is it really that bad ? Is the doctor right ? And then I pull myself together and think about how awful I’m feeling and how my results are getting worse and worse each time I have bloods taken..... I’m just beginning to think though that when I have my endo appointment on the 30th it’s a telephone appointment so surely they’ll be expecting the GP to prescribe from my surgery ? Surely I’m not going to be left again ?
Ah thanks for checking in with me again I really appreciate it. ☺️ so I made an official complaint and also requested to be assigned to a different GP at the practice. I chased up my complaint on Wednesday, so 5 days later, and I literally received an email back (she wouldn’t take my call) to say that under guidelines they don’t need to reply to my complaint for 10 working days 🤷🏻♀️🙄 I am still sat here awaiting a response and am no further forward.
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